Washington, D.C. (09-29-2021) – The Rare Access Action Project, (RAAP), released an updated study reflecting the impact to companies that develop treatments for Rare Diseases through proposed Congressional plans to change Medicare Part D. Rare Diseases are defined as conditions that impact fewer than 200,000 people and that often have no treatments of any kind.
The updated 2021 RAAP study found the costs to drug manufacturers could rise from 400 percent to 2,000 percent..
As the evaluation of the plans indicates in this report, costs to drug manufacturers could rise from 400 percent to 2,000 percent, a crushing blow to emerging companies that often have only a few orphan drugs in their repertoire. The one-size-fits-all approach potentially has a disproportionate impact on the fragile rare disease market.
Dear Chairman Pallone and Ranking Member McMorris Rodgers, The undersigned organizations write to voice our concern and opposition to the inclusion of policies like H.R. 3 in the upcoming reconciliation package. The legislation and other reference pricing policies threaten to significantly reduce the number of medicines available to treat and cure disease. A recent study on the impact of H.R. 3 found that its passage would likely lead to 61 fewer medicines over 10 years. These products most likely will be the most innovative and curative medicines and vaccines the world has ever seen, which would be a significant loss to society and global health.
The Rare Access Action Project (RAAP) announced results of a devastating report conducted on the impact of proposed change to Medicare D to companies that develop treatments for Rare Diseases, conditions that impact fewer than 200,000 people and that often have no treatments of any kind. “The current proposals for changes to Medicare D are supposed to address rising costs to patients,” noted RAAP Executive Director Michael Eging. “Unfortunately, these rather sweeping one-size-fits all plans could actually devastate the orphan drug market that serves patients who already have few options – if any — and that don’t operate as large-scale markets because of the number of patients impacted. The Rare Disease space is a family of sorts, representing a cooperative effort between emerging companies, academics, and patients’ families and advocates. All of this makes the decision to enter the orphan drug market as much a labor of love as it is a leap of faith.”